International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Advice and opinions please

Discussion in 'General ME/CFS Discussion' started by SmokinJoeFraz93, Jan 5, 2018.

  1. SmokinJoeFraz93


    United Kingdom
    In one of my previous posts, I spoke about not being able to watch TV, going on my phone, listen to audio, read books or write due to an irritation in my brain.

    Has anyone else got any ideas what else I can do please? My days are very long doing nothing laying in bed.

    (Ps, I wrote this post despite my brain feeling irritated and strained)
  2. Silencio

    Silencio Senior Member

    What about colored pencils and paper.. just sketching, patterns, doodling. Or coloring books.

    Sorry you are going through such a bad patch. I was like that two years ago but my brain slowly improved to where I can read / watch tv much more. I hope with rest you come out of it.
  3. Gondwanaland

    Gondwanaland Senior Member

    I had this in the past, sensitivity to Electromagnetic Fields. I think low glutathione and insulin resistance are involved. Back then supplementing with Magnesium Oxide resolved it for me. If I had this again today I don't know how I would resolve it because I no longer tolerate this supplement.
  4. Each Day

    Each Day

    I get sensitive to bright lights the more exhausted I get. I can't look at them.
    Normal sunlight is like a mirror directly shining in my eyes, sometimes I squint in normal day light.

    This may not be what you are describing?

    Anyway, I was told (by a doctor, friend) phones and TVs admit some kind of non natural light, is it blue light. Watching them before bed can actually throw the body clock out?

    < Maybe this his an more adverse effect on CFS/ME?
    I admit looking at computer screen a while does make me feel odd when I stop.

    Hope links are ok on here? I think this is fairly common knowledge now, not quackery.

    I wonder (for me) if CFS/ME is something to do with the nervous system out of wack, so maybe sensory overload? I don't know I'm not a doctor.

    For me, at times reading is hard, the words start to just look like letters and my memory struggles to make sense, like my memory does not understand or retain what I read.

    Moving or flashing images also. Oh, and loud noises.

    I wonder if maybe it is a similar response as to stress, not sure though I'm not a doctor.

    I find wearing sun glasses sometimes helps, other times I need a dark quiet room.

    Don't read on unless you are bored and have the energy...
    Warning: Most my post are a load of rubbish. Might be a bit much for some people.
    I'm quite analytical too, so might not be agreeable with everyone.

    I am/was an engineer of sorts, so I'm kind of less open to some ideas.
    I have to deal with facts, risks, liability, very dull. I don't really do grey areas.

    So going away from light..

    I find EMF hard to get my head round with my limited knowledge.
    I know people will argue who wear those bracelets which claim to reduce pain etc..

    As with acupuncture... studies found sticking those needles anywhere has a similar effect.
    Yet, It probably does help some people, if the brain does have the power to heal?

    You'd assume I'm anti alternative treatment, but I'm not at all.
    Please don't get upset, just ignore anything you don't agree with because you'd be misjudging me.

    I take supplements. I think massage is good.
    I use a special light for vitamin D and morning body clock.

    I read, the body uses electricity to send signals. > Your neurons carry messages in the form of electrical signals called nerve impulses. ... Stimuli such as light, sound or pressure all excite your neurons, Good so far.

    Now the engineering bit (my perspective) many things around us could create magnetic fields, in engineering special cable is used to stop interference. So technically power sources could do this if you were that sensitive, power lines, speakers etc. maybe microwaves perhaps. Some things emit frequencies we can't hear too. I would be suspect about duration, range and power needed to feel in a detrimental way, if we were sensitive, I'd expect more people to ill who work with higher exposure..

    The problem is, if we were so sensitive to magnets, our brains or bodies were effected, I wonder if we'd be sick all the time. I appreciate some people with CFS/ME might be more sensitive than others.

    "The Earth is a magnet that can interact with other magnets in this way, so the north end of a compass magnet is drawn to align with the Earth's magnetic field. Because the Earth's magnetic North Pole attracts the "north" ends of other magnets, it is technically the "South Pole" of our planet's magnetic field."

    I don't understand the medical field, I have a hard job believing doctors some times (personal experiences).

    There are three main reasons why people are concerned that cell phones (also known as “mobile” or “wireless” telephones) might have the potential to cause certain health problems:

    • Cell phones emit radio frequency energy (radio waves), a form of non-ionizing radiation, from their antennas. Tissues nearest to the antenna can absorb this energy.
    • Over time, the number of cell phone calls per day, the length of each call, and the amount of time people use cell phones have increased. However, improvements in cell phone technology have resulted in devices that have lower power outputs than earlier models.
    What is radiofrequency energy and how does it affect the body?

    Radiofrequency energy is a form of electromagnetic radiation. Electromagnetic radiation can be categorized into two types: ionizing (e.g., x-rays, radon, and cosmic rays) and non-ionizing (e.g., radiofrequency and extremely low frequency, or power frequency). Electromagnetic radiation is defined according to its wavelength and frequency, which is the number of cycles of a wave that pass a reference point per second. Electromagnetic frequencies are described in units called hertz (Hz).

    The energy of electromagnetic radiation is determined by its frequency; ionizing radiationis high frequency, and therefore high energy, whereas non-ionizing radiation is low frequency, and therefore low energy.

    The frequency of radio frequency electromagnetic radiation ranges from 30 kilohertz (30 kHz, or 30,000 Hz) to 300 gigahertz (300 GHz, or 300 billion Hz). Electromagnetic fields in the radio frequency range are used for telecommunications applications, including cell phones, televisions, and radio transmissions. The human body absorbs energy from devices that emit radio frequency electromagnetic radiation. The dose of the absorbed energy is estimated using a measure called the specific absorption rate (SAR), which is expressed in watts per kilogram of body weight.

    Exposure to ionizing radiation, such as from x-rays, is known to increase the risk of cancer. However, although many studies have examined the potential health effects of non-ionizing radiation from radar, microwave ovens, cell phones, and other sources, there is currently no consistent evidence that non-ionizing radiation increases cancer risk (1).

    The only consistently recognized biological effect of radiofrequency energy is heating. The ability of microwave ovens to heat food is one example of this effect of radio frequency energy. Radio frequency exposure from cell phone use does cause heating to the area of the body where a cell phone or other device is held (ear, head, etc.). However, it is not sufficient to measurably increase body temperature, and there are no other clearly established effects on the body from radio frequency energy.

    As Gondwanaland mentioned....

    It has been suggested that radiofrequency energy might affect glucose metabolism, but two small studies that examined brain glucose metabolism after use of a cell phone showed inconsistent results. Whereas one study showed increased glucose metabolism in the region of the brain close to the antenna compared with tissues on the opposite side of the brain (2), the other study (3) found reduced glucose metabolism on the side of the brain where the phone was used.

    Another study investigated whether exposure to the radio frequency energy from cell phones affects the flow of blood in the brain and found no evidence of such an effect (4).

    The authors of these studies noted that the results are preliminary and that possible health outcomes from changes in glucose metabolism are still unknown. Such inconsistent findings are not uncommon in experimental studies of the biological effects of radio frequency electromagnetic radiation (5). Some contributing factors include assumptions used to estimate doses, failure to consider temperature effects, and lack of blinding of investigators to exposure status.

    How is radiofrequency energy exposure measured in epidemiologic studies?

    Epidemiologic studies use information from several sources, including questionnaires and data from cell phone service providers. Direct measurements are not yet possible outside of a laboratory setting. Estimates take into account the following:

    • How “regularly” study participants use cell phones (the number of calls per week or month)
    • The age and the year when study participants first used a cell phone and the age and the year of last use (allows calculation of the duration of use and time since the start of use)
    • The average number of cell phone calls per day, week, or month (frequency)
    • The average length of a typical cell phone call
    • The total hours of lifetime use, calculated from the length of typical call times, the frequency of use, and the duration of use
    What has research shown about the possible cancer-causing effects of radiofrequency energy?

    Radio frequency energy, unlike ionizing radiation, does not cause DNA damage that can lead to cancer. Its only consistently observed biological effect in humans is tissue heating. In animal studies, it has not been found to cause cancer or to enhance the cancer-causing effects of known chemical carcinogens (68).

    Researchers have carried out several types of epidemiologic studies to investigate the possibility of a relationship between cell phone use and the risk of malignant (cancerous) brain tumors, such as gliomas, as well as benign (noncancerous) tumors, such as acousticneuromas (tumors in the cells of the nerve responsible for hearing), most meningiomas(tumors in the meninges, membranes that cover and protect the brain and spinal cord), and parotid gland tumors (tumors in the salivary glands) (9).

    It is worth noting, recently they said booze can change DNA. Radio waves don't. Apparently!
    I'm not worried and I worry about locking my front door, I check several times. :)
    Last edited: Jan 5, 2018
  5. SmokinJoeFraz93


    United Kingdom
    I was taking an SNRI antidepressant for just over a year. It was called Venlafaxine (Effexor). It worked wonders with my extreme OCD and anxiety.

    Since I corrected the underlying cause (an eating disorder), I decided to come off the medication because I felt I didn’t need it.

    Since coming off it, these symptoms have arose. I’m not saying The meds stopped these symptoms from occurring, but it felt like a coincidence that I’ve got worse with these symptoms since coming off the meds.
  6. PatJ

    PatJ Forum Support Assistant

    A quick web search turns up documents that state Venlafaxine reduces the destruction of certain brain cells and encourages the growth of other brain cells. This means it's neuroproctective and neuroregenerative which is just the type of med that Dr. Cheney recommends when he talks about the lower seizure threshold in ME patients that can lead to overstimulation and eventual death of neurons.
    SmokinJoeFraz93 likes this.
  7. SmokinJoeFraz93


    United Kingdom
    So Venlafaxine is a good thing for me then? Could you send me a link where it says about Venlafaxine having these benefits please?
    Last edited: Jan 6, 2018
  8. Learner1

    Learner1 Forum Support Assistant

    Pacific Northwest
    Given that you have a history of an eating disorder, it is highly likely that you have some sort of nutrient deficiency or imbalance. (No one has a venlafaxine deficiency...though it may alter your biochemistry for good or bad.)

    Nutrients are essential to brain and body biochemistry. Having a thorough nutrient test, like a Genova Diagnostics NutrEval may give you some idea of what's going on. And a good functional medicine doctor may be worth finding for assistance.

    Lack of B vitamins, antioxidants, amino acids, and lipids, can all alter the way your brain functions. This book, if you or a family member can read it, may be helpful:

    New Optimum Nutrition for the Mind
    SmokinJoeFraz93 likes this.
  9. PatJ

    PatJ Forum Support Assistant

    Based on what you've said, and what Dr. Cheney has said in the article that I linked, then maybe venlafaxine was helping to keep your symptoms at bay, but I'm not a doctor so I can't be sure, and this isn't medical advice. Dr. Cheney lists some other possible supplements and meds in that article.

    Here is the Google search that I used for "venlafaxine neurons" so you'll have various links to follow.
  10. hangininthere


    Effexor can have terrible withdrawal symptoms when you stop taking it. Did you wean off of the Effexor slowly and meticulously?

    If not, maybe a little 'hair of the dog' would help ease the withdrawal, if you have any Effexor pills left or can get prescribed more, so as to slowly wean. Such as take one dose every few days or once a week, instead of the daily dose.

    Weaning from Effexor can be a long miserable process.

    PatJ and SmokinJoeFraz93 like this.

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